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Fostering public trust in national health data platforms: key considerations for public involvement activities for England and Switzerland

Published online by Cambridge University Press:  17 February 2025

Paola Daniore Open the ORCID record for Paola Daniore [Opens in a new window] ,
Katherine-Helen Hurndall ,
Federica Zavattaro ,
Melanie Leis  and
Felix Gille Open the ORCID record for Felix Gille [Opens in a new window]
Paola Daniore*
Affiliation:
Center for Digital Trust, Federal Institute of Technology Lausanne, Lausanne, Switzerland Digital Society Initiative, University of Zurich, Zurich, Switzerland
Katherine-Helen Hurndall
Affiliation:
Institute of Global Health Innovation, Imperial College London, London, UK
Federica Zavattaro
Affiliation:
Digital Society Initiative, University of Zurich, Zurich, Switzerland Institute for Implementation Science in Health Care, University of Zurich, Zurich, Switzerland
Melanie Leis
Affiliation:
Institute of Global Health Innovation, Imperial College London, London, UK
Felix Gille
Affiliation:
Digital Society Initiative, University of Zurich, Zurich, Switzerland Institute for Implementation Science in Health Care, University of Zurich, Zurich, Switzerland
*
Corresponding author: Paola Daniore; Email: [email protected]

Abstract

Recent developments in national health data platforms have the potential to significantly advance medical research, improve public health outcomes, and foster public trust in data governance. Across Europe, initiatives such as the NHS Research Secure Data Environment in England and the Data Room for Health-Related Research in Switzerland are underway, reflecting examples analogous to the European Health Data Space in two non-EU nations. Policy discussions in England and Switzerland emphasize building public trust to foster participation and ensure the success of these platforms. Central to building public trust is investing efforts into developing and implementing public involvement activities. In this commentary, we refer to three national research programs, namely the UK Biobank, Genomics England, and the Swiss Health Study, which implemented effective public involvement activities and achieved high participation rates. The public involvement activities used within these programs are presented following on established guiding principles for fostering public trust in health data research. Under this lens, we provide actionable policy recommendations to inform the development of trust-building public involvement activities for national health data platforms.

Keywords

data sharingdigital healthhealth data platformspublic involvementpublic trust
Type
Commentary
Information
Data & Policy , Volume 7 , 2025 , e20
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Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2025. Published by Cambridge University Press

Policy Significance Statement

This commentary aims to inform ongoing policy discussions and activities related to fostering public trust in national health data platforms. Drawing on trust-building guiding principles applied to three national research programs, this commentary outlines policy recommendations for developing public involvement activities that foster public trust. The application of these recommendations in public involvement activities can foster legitimacy and broader participation in national health data platforms.

1. Introduction

The increased digitalization of healthcare systems has enabled the generation of a wealth of data, prompting novel health data sharing initiatives worldwide to transform health delivery and care (Kalkman et al., Reference Kalkman, van Delden, Banerjee, Tyl, Mostert and van Thiel2022). Among these is the establishment of national health data platforms, driven in large by the observed shortcomings in using available data to inform responses during the COVID-19 pandemic (Danemayer et al., Reference Danemayer, Young, Green, Ezenwa and Klein2023). These initiatives facilitate the pooling of resources for more targeted research to inform policies aimed at crisis mitigation and improving health systems, along with patient care based on data-driven discoveries (Jit et al., Reference Jit, Ananthakrishnan, McKee, Wouters, Beutels and Teerawattananon2021; Park et al., Reference Park, Mogg, Smith, Nakimuli-Mpungu, Jehan, Rayner, Condo, Decloedt, Nachega, Reis and Mills2021). However, for their successful implementation, building public trust must be prioritized as it is closely linked to their legitimacy and public participation in the initiatives (Enria et al., Reference Enria, Waterlow, Rogers, Brindle, Lal, Eggo, Lees and Roberts2021; Nanni et al., Reference Nanni, Andrienko, Barabási, Boldrini, Bonchi, Cattuto, Chiaromonte, Comandé, Conti, Coté, Dignum, Dignum, Domingo-Ferrer, Ferragina, Giannotti, Guidotti, Helbing, Kaski, Kertesz and Vespignani2021; Ihlen et al., Reference Ihlen, Just, Kjeldsen, Mølster, Offerdal, Rasmussen and Skogerbø2022).

An approach to building public trust in data sharing initiative is through public involvement (Kaye et al., Reference Kaye, Curren, Anderson, Edwards, Fullerton, Kanellopoulou, Lund, MacArthur, Mascalzoni, Shepherd, Taylor, Terry and Winter2012; Platt et al., Reference Platt, Jacobson and Kardia2018). Public involvement can build public trust from the onset, by shaping the initiative itself to ensure that it addresses the needs of the public whose data is stored and used to realize a net benefit for both the health system and the public (Gille, Reference Gille2023). Public trust can then be maintained through meaningful involvement during the development and implementation of the initiative. This can contribute to increased social cohesion and public support for the initiative. When this is not the case or, if public trust is lost, the opposite may happen as a result of, among others, unaddressed public concerns over privacy, data misuse and lack of self-determination, which can potentially undermine the success of the initiative (Raab et al., Reference Raab, Küderle, Zakreuskaya, Stern, Klucken, Kaissis, Rueckert, Boll, Eils, Wagener and Eskofier2023).

Recent developments in public involvement activities can be observed in health data platforms in England and Switzerland (Zimmermann et al., Reference Zimmermann, Aebi, Kolb, Shaw and Elger2019). These transition away from one-way public communication efforts to meaningful involvement that fosters dialogue between the public and experts to build trust in the initiatives (Samuel and Farsides, Reference Samuel and Farsides2018). A promising example is England’s OneLondon Health Data Strategy, a health data platform that engages a citizens’ advisory group consisting of 100 representative members of the London public to advise on access rights to the platform, the data, and associated costs in collaboration with experts (OneLondon, 2024). In Switzerland, public involvement has been seen in the form of bottom-up data cooperatives, such as MIDATA, where citizens can become members of the cooperative, discuss with involved experts, and vote on major decisions (Gille and Vayena, Reference Gille, Vayena, Frischmann, Strandburg and Sanfilippo2021; MIDATA, 2024).

Meanwhile, there is also a trend of public disengagement from national health data sharing initiatives due to insufficient public involvement efforts. This has been observed with public reactions to the failed implementation of England’s CARE.DATA Program (2013–2016), where a lack of public involvement was faulted for eroding trust (Sterckx et al., Reference Sterckx, Rakic, Cockbain and Borry2016). Similar concerns are now being raised after NHS England awarded Palantir a contract to create a federated health data platform, with citizens calling for the contract to be paused until public involvement measures are in place (Armstrong, Reference Armstrong2023; Osborne, Reference Osborne2024). In Switzerland, low adoption at the national level of the personal electronic patient record is being attributed to a lack of public involvement and limited public understanding of its benefits (Martani et al., Reference Martani, Geneviève, Wangmo, Maurer, Crameri, Erard, Spoendlin, Pauli-Magnus, Pittet, Sengstag, Soldini, Hirschel, Borisch, Kruschel Weber, Zwahlen and Elger2023; swissinfo, 2023). Public disengagement from national health data sharing initiatives can undermine their success, highlighting the need for trustworthy public involvement activities in national health data platforms.

In this commentary, we refer to two national health data platforms currently under development, namely the NHS Research Secure Data Environment (SDE) Network (NHS England, 2024; NHS England Digital, 2024) and the Swiss Data Room for Health-Related Research (Federal Office of Public Health, 2024b). To ensure that their public involvement activities are effective and, in turn, contribute to the development of trustworthy health data platforms, it is crucial that they are informed by successful experiences from similar large-scale data sharing initiatives. Drawing from three examples in England and Switzerland (Bourqui et al., Reference Bourqui, Nusslé, von Goetz, Veys-Takeuchi, Zuppinger, Boulez, Bühler, Chapatte, Currat, Dousse, Faivre, Franco, Virzi, Bourqui-Pittet and Bochud2023; Genomics England, 2024; UK Biobank, 2024a), we aim to provide preliminary guidance for involved policymakers and stakeholders to develop public involvement activities that contribute to building public trust in national health data platforms.

2. Trust-building public involvement activities in national research programs

To inform the development of trust-building public involvement activities for national health data platforms, we refer to three nationwide research programs: UK Biobank (UK Biobank, 2024a), Genomics England (Genomics England, 2024), and the Swiss Health Study (SHeS) (Bühler et al., Reference Bühler, Frahsa, Morand Bourqui, Von Götz, Bochud and Panese2024; Swiss Biobanking Platform, 2024; Swiss Health Study, 2024). These programs are notable examples of recent health data sharing initiatives that implemented public involvement activities that contributed to their overall success (Samuel and Farsides, Reference Samuel and Farsides2018). Similar to national health data platforms, these research programs are national initiatives aimed at enabling novel research by providing access to health-related data. However, the research programs provide access to health-related data from long-term studies only, while health data platforms aim to provide access to health-related data from various sources.

UK Biobank, established in 2007, and Genomics England, established in 2013, are two successful long-term national research programs, which collect and provide access to vast amounts of data ranging from genomics data to data on health exposures, interactions, and outcomes. In UK Biobank, this data has also been linked to established datasets, including cancer registries and primary care records (Conroy et al., Reference Conroy, Lacey, Bešević, Omiyale, Feng, Effingham, Sellers, Sheard, Pancholi, Gregory, Busby, Collins and Allen2023; Pavey et al., Reference Pavey, Kulkarni, Wood, Ben-Shlomo, Sever, McEniery and Wilkinson2022; UK Biobank, 2023a, 2024b). These projects have resulted in the publication of thousands of scientific papers and have facilitated the successful involvement of global collaborators and industry (Pfizer, 2022; Regeron, 2018; UK Biobank, 2022), whilst maintaining stable public participation (Sudlow et al., Reference Sudlow, Gallacher, Allen, Beral, Burton, Danesh, Downey, Elliott, Green, Landray, Liu, Matthews, Ong, Pell, Silman, Young, Sprosen, Peakman and Collins2015; Tyrrell et al., Reference Tyrrell, Zheng, Beaumont, Hinton, Richardson, Wood, Davey Smith, Frayling and Tilling2021; UK Biobank, 2024c). A key contributor to the success of these programs has been the meaningful involvement of the public, with activities ranging from the inclusion of citizens on advisory and ethics committees to the provision of in-person and online contact portals for participants and the public (Levitt, Reference Levitt2005; UK Biobank, 2023b).

The SHeS, established in 2020, is a large-scale precision public health cohort led by the Swiss Federal Office of Public Health in collaboration with the Swiss Biobanking Platform and academic institutions in Switzerland (Bühler et al., Reference Bühler, Frahsa, Morand Bourqui, Von Götz, Bochud and Panese2024; Swiss Biobanking Platform, 2024; Swiss Health Study, 2024). The pilot phase of the SHeS was completed in 2022, which demonstrated the feasibility of the population cohort at the national level. The program’s participation rate surpassed that of similar population-based studies in neighboring countries, which can in part be attributed to the program’s implementation of a public involvement strategy (Bourqui et al., Reference Bourqui, Nusslé, von Goetz, Veys-Takeuchi, Zuppinger, Boulez, Bühler, Chapatte, Currat, Dousse, Faivre, Franco, Virzi, Bourqui-Pittet and Bochud2023; Bühler, Reference Bühler2023; Bühler et al., Reference Bühler, Frahsa, Morand Bourqui, Von Götz, Bochud and Panese2024). The gained insights from the pilot informed the inclusion of public involvement activities within the governance of the SHeS to be applied in its future scaling-up stages (Bühler, Reference Bühler2023).

By applying the guiding principles on fostering public trust in personal data use in health research by Gille et al. (Reference Gille, Smith and Mays2022), we provide an overview of the public involvement activities used by the three national research programs under the lens of public trust (Table 1). This perspective can inform the development of future public involvement activities that can build public trust in health data sharing initiatives and, in turn, contribute to their success.

Table 1. Public involvement activities displayed within guiding principles to foster public trust in national research programs

a The public interest and work toward realizing a net benefit for the health system and the public constructs of the guidance framework were merged due to thematic similarities.

Stable levels of participation in the UK Biobank and Genomics England suggest that their comprehensive approaches to involving the public at various stages of the programs may have contributed to their success. Public involvement activities that contributed to building public trust in the programs include, but are not limited to, their initiatives to co-design the contents of their promotional material and recruitment strategies, their seeking public feedback during the programs’ setup, and adapting public involvement activities to local circumstances to meaningfully involve underserved communities across England. Both research programs maintain regular updates and contact portals for participants and the public, along with lay committees that decide on various aspects of the research conducted through the programs.

Similarly, high participation in the SHeS pilot, and the expressed interest of its participants to take part in the program as it scales up, suggest that trust building measures identified within the program’s public involvement activities may contribute to the program’s success after the pilot. Activities within the SHeS focused on engaging the public during the pilot program to gather information on their needs for the national research program and their involvement expectations during scale up. This demonstrates a commitment to build trust and inform meaningful public involvement from the outset. The program also focused on the early inclusion of citizens on advisory and ethics committees, and provided regular updates on the study’s progress.

Overall, these programs meaningfully involved the public in shaping inclusive and patient-centered research. By exploring the public involvement activities of these programs using the guiding principles proposed by Gille et al. (Reference Gille, Smith and Mays2022), those that played a prominent role in trust-building are made evident. Applying these guiding principles to inform the design of public involvement activities in other data sharing initiatives can be instrumental in building public trust and, consequently, contributing to the success of those programs.

3. What can national health data platforms learn from national research programs about public involvement that fosters public trust?

National health data platforms from England and Switzerland, the NHS Research SDE Network (NHS England, 2024; NHS England Digital, 2024), and the Swiss Data Room for Health-Related Research (Federal Office of Public Health, 2024b; hereafter referred to as the Swiss health data space), respectively, are designed to offer health data in secure environments for secondary use by researchers and trusted organizations. These countries are recognized for their innovation in the healthcare sectors compared to other European countries (Lawton Smith et al., Reference Lawton Smith, Bagchi-Sen and Edmunds2016) and are spearheading the development of their own national health data platforms alongside the European Health Data Space, despite not participating in the initiative itself (European Commission, 2024).

Integral to the development of both countries’ national health data platforms is their commitment to fostering public trust through public involvement activities. In England, this commitment is evident through the government’s launch of the “Data Saves Lives” strategy, which acknowledges the crucial role of public trust in data sharing through SDEs by fostering transparency, security, and public benefit (Department of Health and Social Care, 2022). Notably, this strategy includes a dedicated fund for public involvement activities, which are currently ongoing. In Switzerland, the Swiss health data space is part of the Digisanté strategy to promote the digital transformation of the healthcare system (Federal Council, 2024; Federal Office of Public Health, 2024a). As part of the government’s health policy strategy for the initiative, there is explicit emphasis on the need to build public trust in the reliability and security of data collection, storage, and exchange. For the Swiss health data space, this translated to a public involvement activity in the form of a national study aimed at informing its trustworthy development (Daniore et al, Reference Daniore, Zavattaro and Gille2024).

When referring to the initial public involvement activities conducted so far by both countries, common themes emerge around the public’s requirements to trust their respective national health data platforms. Overall, members of the public perceive health data platforms as more trustworthy conditional on them delivering on their promised higher levels of transparency and security, compared to other data sharing initiatives (Goldacre and Morley, Reference Goldacre and Morley2022). Several factors influence the perceived trustworthiness of health data platforms. These include the public benefit of the research, accountability measures for data misuse, the ability of the public to opt into, or out of, the platform, and the representativeness of their advisory groups (Harkness et al., Reference Harkness, Blodgett, Rijneveld, Waind, Amugi and McDonanld2022). Special emphasis on trustworthiness is placed on access control of the data, with public support evident for actors from health systems, academia, and national charities. Comparatively, commercial companies lack such support (Ghafur et al., Reference Ghafur, Dael, Leis, Darzi and Sheikh2020; The Health Foundation, 2023), with members of the public citing concerns about data privacy, security, and potential misuse of sensitive data (Ruparel et al., Reference Ruparel, Lee, Horner, Fox, Carruthers and Tarafdar2023; Department for Science, Innovation and Technology, 2024).

As developments progress on both national health data platforms, it is important that future public involvement activities are meaningfully developed and implemented to ensure that they foster public trust in these initiatives. Along with applying our suggested approach in Table 1 to design trust-building public involvement activities, we recommend that policymakers critically assess how effective these activities are at building public trust. We propose guiding recommendations (Table 2) to facilitate this assessment by synthesizing the key principles from Gille et al. (Reference Gille, Smith and Mays2022) that are most relevant to national research programs (Table 1). These guiding recommendations are supported by strategies for their implementaction based on referenced PPI work conducted for the national health data platforms in England (Goldacre and Morley, Reference Goldacre and Morley2022; Harkness et al., Reference Harkness, Blodgett, Rijneveld, Waind, Amugi and McDonanld2022) and Switzerland (Daniore et al, Reference Daniore, Zavattaro and Gille2024). The recommendations and strategies described in Table 2 can assist with the critical development, monitoring, and assessment of public involvement activities for national data health platforms that the public can trust.

Table 2. Guiding recommendations for trust-building public involvement activities from national research program learnings

Alongside the recommendations and strategies for trust-building public involvement activities proposed in Table 2, it is important to consider these within the context of current factors that may affect their implementation. For example, feedback from citizens and patients in the advisory group on the “Data Saves Lives” strategy in England has highlighted that meaningful public involvement in co-designing a Data Pact for national data platforms requires significantly higher time investments than anticipated, with multiple discussions rounds among relevant stakeholders needed to effectively build public trust (Latta, Reference Latta2023; NHS England, 2023). In Switzerland, implementation challenges are more pronounced compared to England as there have been fewer efforts to prioritize public involvement activities in the national health data platform. This commentary introduces the first undertaken public involvement activity to inform the trustworthy development of the Swiss health data space (Daniore et al, Reference Daniore, Zavattaro and Gille2024). However, the main challenge for Switzerland will be to develop and implement a unified, meaningful, and reciprocal public involvement approach that both informs the development of the national health data platform and fosters public trust.

More generally for national health data platforms, there are additional implementation factors to consider, such as the need to include underrepresented and marginalized groups to ensure their voices are heard and their needs are addressed. Establishing clear processes for integrating public feedback into the national health data platforms and the research studies conducted from them is also essential, while also demonstrating how public input influences decisions and outcomes. Furthermore, continuous evaluation of public involvement strategies is crucial to assess whether they contribute to increased public trust in the health data platforms. This can be achieved through regular assessments using both quantitative and qualitative metrics, such as trust performance indicators, with adjustments made based on feedback and evolving circumstances (Gille et al., Reference Gille, Daniore and Zavattaro2024). By accounting for these factors during implementation, national health data platforms can build public trust, while fostering collaboration and contributing to more impactful research outcomes.

4. Conclusion

Developing and implementing public involvement activities will be central for the success of England’s NHS Research SDE Network and the Swiss health data space. By learning from trust-building public involvement activities from successful national research programs, policymakers and stakeholders involved in both national health data platforms can take meaningful, actionable steps to shape the initiatives into ones that the public can trust. Equally as important is need for the public involvement activities to be validated by expert input, to ensure their feasibility in implementation and practical benefit for the success of the national health data platforms.

Data availability statement

Data availability is not applicable to this article as no new data were created or analyzed in this study.

Author contribution

P.D. conceptualized and wrote the first version of this paper and revised the final version of this paper. K.H.H. provided additional relevant input and feedback that informed the content of this paper and revised the final version of this paper. F.Z. provided relevant feedback on a previous version of this paper and revised and approved the final version of this paper. F.G. and M.L. assisted with the conceptualization of the first version of this paper and revised and approved the final version of this paper.

Funding statement

F.G. receives funding from Novartis AG, Stiftung Sanitas Krankenversicherung, and Digital Society Initiative, University of Zurich. F.G. reports funding from Schweizerische Akademie der Technischen Wissenschaften and World Health Organization outside of the submitted work. P.D. and F.Z. received funding from the Digital Society Initiative, University of Zurich. The funders had no role in writing the manuscript.

Competing interest

The authors declare none.

Footnotes

P.D. and K.-H.H. contributed equally to this work.

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Table 1. Public involvement activities displayed within guiding principles to foster public trust in national research programs

Figure 1

Table 2. Guiding recommendations for trust-building public involvement activities from national research program learnings

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